ACT V : I’ve had more use for Lamaze in chemo than I ever did in childbirth.

Act V

I’ve had more use for Lamaze in chemo than I ever did in childbirth.

The way I would choose to describe Act V of chemo would be to say that it has become familiar. It is easier in the sense that when the Neulasta pains come I know it will ease in 2 days; or when I am feeling nauseated I know what to do to settle those muscles. When my mouth tastes full of rancid chemicals, I grab the bio-tene spray. I am tired as all get-out, but I am in control.

“Just breathe…”

I have two kids, and both times labor was so fast that I could hardly catch my breath never mind breathe. But, those Lamaze classes were not wasted!!  I first of all lived through the teen years (BREATHE), and now – chemo.

When that tell-tale sign, you know that watery tingle at the back of your tongue?, when that starts up I focus, breathe in through the nose, slowly out through the mouth… and often times I am able to calm the tummy down. Or at least buy me enough time to hustle to the appropriate facility.

The “hee hee hoooo” breaths work with the Neulasta pains. They come on suddenly and are pretty sharp, the short breaths help to ride them out.

And that grande finale of Lamaze? That “push push” ?   Save that for the next person that asks “Didn’t you go for mammograms?”

We are aware.

Here is a great article written by Ann Silberman that I want to share.  As she states in here, ok, we’re all aware about breast cancer… now what?

We need the medical world to be able to DO something about it.   We need more researchers studying how does this happen? How do we stop it?  That’s where I feel most of the money and attention should be going.  Everyone is aware of the prevalence of cancer, all cancers.  We need the smart people to find out what to do about it.  Keep the awareness going, and keep the research going just as much.   I myself am on a drug just approved last year, so yes I know there is still research being done; I feel we need that to be the stronger focus.

Please read this intelligent and well written article, and share.

http://www.healthline.com/health/breast-cancer/turn-from-awareness-to-research

What I miss, (today).

I miss nose hair.

Have you ever even thought about yours?  I never gave a thought to them before, but I have an appreciation for their role now, that’s for sure!

I live in Reno, Nevada, in what is called “The high desert.” It is dry, can be dusty, and is often breezy.  So, while we don’t have much pollution, the air does carry the desert dust some days.   Add to that, the fact that I am not a good housekeeper (dust bunnies are my pets) and there you have the basis for my less than pristine environment.

I noticed I’ve been sneezing, and my nose will start running.  At first I was concerned I was coming down with a cold (when you are getting chemo your immunity is compromised, so any type of illness – even so minor as a cold – is something the doctors want to know about and monitor).   Then I noted that this sneezing or runny nose would start and stop so quickly.  It is such a brief condition and I was glad for that; but still curious.

Finally it hit me, the light bulb went off, and I had that “ah-HA!” moment: my filters are gone!   Every little bit of dust can easily get breathed in, and does, and sets off a tickle or a sneeze.
Our nose hair must protect us from quite a lot of airborne contaminates from microscopic, to noticeable lints and dust, daily.  That’s a lot of bombardment for the old schnoz when the hair disappears.  So I’ve taken to using the disposable face masks when I do get around to housecleaning and have a saline solution nasal spray too.  Otherwise, I keep a tissue in my pocket for those ahh-choo moments.

Nose hair.  Who would have thought you could miss ’em?

Act III

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We’re all so different; even when sharing the same experience. I am halfway through chemo and finding it to be quite manageable; but the thought of the surgery that lies down the road scares me and makes me very nervous.   I talked with a friend about this tonight and she said that months of chemo sounds more unbearable to her than getting surgery after which you are immediately recovering.

I’d like to share my moments of success in dealing with the chemo side effects. And I would really like to know what has worked for others in this area too. Here’s what has worked for me:

The nausea; I have fortunately inherited a cast-iron stomach but nonetheless have experienced the queasy yukkiness. The medications given to prevent it do a great job at keeping it at bay, but there still have been moments. I’ve triggered the problem at times. I drink a lot of water, and while true it is good for you to drink plenty, I would down a full glass which was too much for my stomach to take in on those sensitive days. Pepto-Bismal has helped me on those days, and drinking room temperature ginger ale or orange Gatorade. Another friend has had good results with peppermint tea. Ginger candy ( gin-gin ) is great. This worked wonders for me after my first chemo session, but my taste buds have been super sensitive since then and I have not been able to eat them again – yet!

And speaking of taste buds; my sense of taste gets really bad for the first 2 weeks of chemo. I have to eat small amounts that are not hot, and swallow it quickly. I feel like my mouth is full of something acidic and rancid. Things will smell delightful, but once in my mouth this awful taste is triggered.   Any taste is amplified, so spicy becomes super spicy, and so sharp that it hurts. I used to say I loved “food on fire” because of my love of hot and spicy; i.e.: my favorite pizza is Black Rock Pizza’s “The Brush Fire”. Oh man, I miss enjoying food! But, I know this is temporary and I will enjoy it all the more when I get my taste buds back. In the meantime, a friend told me she used Biotene spray. I will be testing that out after my next infusion. I also take the store brand of prilosec and tums, because this acidic feeling gives me bad heartburn too. What I can eat at this time that really helps is real Italian Ice. It doesn’t fill you up, it’s soothing, and made with real fruit so it is good for you too.

I have always been prone to canker sores my whole life, till finally a doctor told me to try L-Lysine. I take it that moment I feel a tingle of a sore starting, and it has worked. I rarely get them anymore. Now during this ordeal, I take it beginning day 7 after chemo until I get to feeling almost normal again.

For my skin breaking out, I soak in a tub with Epson salts – often times including essential oils of some sort. This is very soothing in and of itself, but it is good for my skin too. I use coconut oil for moisturizer (moisturizer is essential in the high desert where I live in Reno Nevada). When I first break out it feels very itchy, like an allergic reaction. So for those times I use hydrocortisone, and twice I took Benadryl for the itchiness.

I get cold easily, so I keep some kind of heating wrap with me always; an electric blanket or a microwaveable heating pad. And now that my scalp is not sore, I can wear hats, scarves, and wigs. I’d suggest browsing etsy. I have a couple hats from here that I really like:  https://www.etsy.com/shop/CJHats

and here: http://www.curediva.com/shop-by-product/hats-head-covers.html

I hope these are helpful tidbits for someone; feel free to share your own helpful hints too!

Act II ~ A lesson in following the lead.

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There’s something to be said for familiarity, and expectations.  Heading into my second appointment for infusion I knew exactly what to expect and what it all would feel like.  Infusion and the neulasta injection the next day have not created any immediate reactions for me.  Once it is in my system I start to feel it working, but no problems with the day of. (I am sure the first experience I had last month was a stomach bug, not a side effect.)

So the second round has gone well for me. That is not to say “easy” (I’ll tell you my comedic parking lot incident in a moment) but all things considered, this round has gone well. The side effects have been expected and I knew what was coming and figured out how to handle it.

Or, maybe what is really happening is that I have accepted that I should not push for control but I can follow the lead.

I can recognize now when I am feeling tired from chemo as opposed to tired from physical work. With the chemo fatigue, there is no putting it off; I need to stop. On those days, I find when I get myself home I need to actually lay down and sleep. I am sure I will sleep standing up if I don’t. My body is not going to let me put it off, and when I did wait too long, it ended up with me falling asleep fully clothed, shoes and all, sleeping for 10 hours.

I know that my sense of taste will come and go. When it is working pretty close to normal I am making sure to go for it and enjoy it! I can only eat small amounts for now, but oh boy the pleasure from a small bowl of blueberries is something I will never ever take for granted. I miss that when it is gone, but I know it is a temporary absence.

So I am learning to pace myself accordingly, whether it be eating, sleeping, working; I’m listening to my body’s response.

Here was my “ah ha” moment when I learned this lesson. During this second week I was at work, feeling queasy, tired, and pretty much having one of those “brain fog” days.   I hadn’t eaten much for a couple of days and thought I needed to eat to boost my energy and clear my head with a good healthy meal. I had brought broiled chicken, potatoes, and green beans from home and over the course of the afternoon I pushed myself to finish it off. It smelled like it was burnt, and tasted like chemicals but I pushed myself to eat it in order to fuel my body.   My body was not thankful and the fog was not lifting and now my stomach was churning.

My biggest fear of working through chemo is that I might throw-up in public. I think we all have odd and unreasonable fears of something or other (some people are afraid of cats… I don’t get it! Fluffy?!) For me it is the embarrassment of puking in public. It has never happened and I wanted to keep it that way. I plotted out my path to the restroom should I need to make a run for it, and carefully focused on every turn my stomach took, taking a deep cleansing breath with each one. Needless to say I didn’t get much work done that afternoon.

Finally the day was over and I began my commute home. It is winter time so I as usual cranked up the heat but it still wasn’t warming me up that night. It did make me sleepy though which was not a smart move on my 45 minute drive home, I was thankful when I made it to my neighborhood. “Ah, minutes to home, and then who cares what happens!” Knowing that ginger ale is good for upset stomachs I stopped in my local grocery store.

Why did I think I could run in for one item? Is there any mom who can actually do that? I got the ginger ale but also needed kitty litter and I was walking right by it. Then of course I noticed frozen veggies on sale and we always need those. It was then I started to get that tingling feeling at the back of my mouth. Quickly I assessed – can I make it to check out and home, or do I need to find the restrooms? I went to check out.   The sweet friendly clerk was chatty and all I could return was monosyllabic responses as I breathed slow and deep. Finally I was out the door, into the cold night air, clicking my key fob to open the trunk, and reciting my mantra “I can do this. Almost done. Almost home.”

I picked up the kitty litter, and the weight of it was the last straw – it sent my stomach into a tailspin which no deep breathing could control, made me double over and throw up right there in the neighborhood grocery store parking lot. “Oh please god I hope nobody saw me, please please please…” as I glanced around. It was wicked cold out, and fortunately I saw no one who could have witnessed my condition as my stomach gave one more wave to purge itself of healthy food. I was disgusted at having violated this lovely little shopping center. Still praying for invisibility, and feeling the need to somehow lessen my offense, I grabbed a spare gallon of water I keep in my trunk, and splashed the puddle I’d created to wash it away (no thought to the black ice I would be creating in its place!)

Comforted by the cloak of darkness, I tossed the empty jug and last grocery bag in the trunk, and wearily turned to push the the shopping cart to its corral. In doing so, my key fob hit the cart handle setting off the panic button resulting in my car alarm beeping and the lights flashing on and off. Frozen in place, in the strobe light of my car, I stared at the slapstick comedy I was in the midst of. If anyone had not seen me before this moment, they were sure to look now.

I looked to the skies and gave an exhausted “really?”   With an “oh F* it” under my breath I laughed, put away the cart, then fell into my car and finally headed home.

I recognized I was trying to control instead of following the lead.

(The next day when I recounted this story to my son, he said “You should have taken that show down to Wal-Mart, Mom; no one would have paid any attention to you there”

We’re a family of smart-asses, and he makes me proud.)

Hair

When performing, if your scarf, earring, whatever, falls off – you don’t stop to pick it up and put it back on; you kick it to the curb and dance on!

There is a theatrical side of me that really blossomed when I started belly dancing.  My spirited dance teacher used to say, “There’s no such thing as ‘too much’ in belly dance!”  ie: Big earrings, tons of jewelry, layers of costume, lots of make-up and for us, always, glitter.   This one year I bought a big circle skirt for a particular performance, and it was a gorgeous bright fuchsia. My hair was a dark burgundy at the time and I remember giggling as I told my hairdresser that I wanted to try something a little crazy with my hair: fuchsia highlights, as bright as this fabulous skirt I was dancing in.  That’s where it all began; a few bright highlights that became bigger and bolder with each follow up appointment til one day I suggested we just do the whole thing in fuchsia.  Oh it was beautiful and FUN!!  From there I have tried all kinds of color combinations as the products became available.  It has been a conversation starter and topic of interest for years! And my answer to the inevitable question of ‘why’, or ‘what’s next?’ was to explain that my hair was simply a whimsical accessory and I would change it as easily as I changed my earrings.  It wasn’t important, it wasn’t a statement, it was merely fun.  I don’t think many people really understood that point of view. So, of course as friends and coworkers heard of my diagnosis of cancer, they thought of me and thought of my colorful hair.

Cancer = chemo = hair loss.

I now know many women who have been through chemo, they’ve shared with me how they handled the loss of hair. For many it was a ceremony or party kind of approach, with the sense of taking control of what was happening to them. Surrounded by friends and family they cut off their hair when they chose for it to happen, instead of watching it fall out. They had great names for their parties too: “Buzz Party”, “Coming Out Party” and “Close Shave Party”. These are perfect ideas for those that did them, but it doesn’t mean it is right for everyone. It wasn’t what I wanted. I don’t feel festive about this process.

What I want is to feel what is happening; I want to be in tuned. I am taking in a slew of drugs to kill this cancer, and that is what makes me feel empowered and in control. In the midst of this battle, I’m not going to stop to clean up and look pretty; I’m going to keep blasting at the enemy. It is the use of chemo that is empowering me.

And as my hair falls out that shows me that the drugs are working. Looking at a handful of hair I can say “Ha! Dying off like all the cancer cells inside.” And I triumphantly toss that handful of hair in the trash; Kicking it to the curb.

Hair Show

Act One

????????????????????????????????????????The first day of chemo was the only relaxing day I’d had in a month.  I got to sit in a big recliner with my big soft blanket, and free Wi-Fi for 7 hours in a quiet peaceful atmosphere.  If I had been tired, that would have been an ideal spot for a nap.  As it was, I was just tired of the harried rush that life had become.

All went well with the infusion; I had no immediate reactions, and went home intensely focused on “how was I feeling.” And again with the injection of neulasta the next day; there was no real reaction to it. When I got back to work the following morning I remember feeling like “Wow, I can handle this.”

It was 2 weeks before Christmas and I finally had time to start the upcoming holiday season.

I made plans. And my body laughed.

That night, day 2 after chemo, the aches and pains started. Calling it similar to an achy flu is rather inadequate for my experience. Although I have to admit that my experience with the flu is thankfully minimal anyway.   This was like a pin-ball machine going off on the inner core of my body. My hip would get a zing of pain that made me catch my breath, and then suddenly my thigh or a rib would get the zinger. I couldn’t rub this away like you do when you walk into the dishwasher door that’s left open (c’mon, we’ve all done that right?!).   Lying under my electric blanket didn’t ease the aches either, but it did soothe the rest of me. Day 3 to 7 was miserable, but I can’t be sure it was chemo related. Several other people I know had come down with a stomach bug and I am not sure if that is what I had or if it was chemo reaction.

As the stomach issues subsided, my sense of taste and smell whacked out. For many days my mouth felt full of acid. Eating anything acidic like spaghetti sauce was amplified and awful. Something spicy such as salsa was like having a pin cushion in my mouth. Even gingerbread was too sharp. The hardest part of this was not being able to taste my cup of tea in the morning. If you are a tea or coffee drinker, you know the headache you’ll get if you don’t get your morning cuppa, it’s not nice. So I made my tea, and yuk – it wasn’t acidic but it wasn’t the enjoyable sweetness I was expecting. I drank it anyway of course, and hoped that the taste issue would pass as quickly as the other discomforts.

The sense of smell though, that was a weird and unexpected issue for me. As I drove home from work on day 9 after chemo I thought I smelled burning plastic inside my car. I got out and it sure seemed to be coming from the engine. I was quite concerned so I had my son check it out, and he found there was no odd smell and certainly nothing on fire. Other things smelled wrong too: my hair smelled funny to me, one pair of boots in particular did too. I didn’t ask my son to smell my boots; at this point I just accepted that my olfactory settings were off!

What is interesting to me is as I got over this stomach and senses issue; I swear I could feel the path the chemo drugs were taking in my body. Specifically The lymph node where the cancer was found started to twinge a good bit, and for the first time, on the inside, I could feel the tumor in the breast. In my mind, I saw this as my weapons reaching their targets and doing their job. This is when I really began to feel like I was taking the lead.

And this leads me to the next indignity on this adventure – acne. Well, it isn’t really acne, but my neck and face started breaking out as all these drugs were being processed and removed from my system. My neck muscles began to hurt, and then there were a few pimples just along my chin. Within a day more and more pimples, beginning along the chin then cheeks, then forehead. These were sore and forceful, and itchy. A couple of them just started to bleed on their own. It was (and still is) really quite disgusting. If only it was time for Halloween and the Zombie Crawl, I would fit right in! Thank goodness for my age and solid self-esteem; and okay – heavy doses of makeup! – that got me through this latest affront.

This is all unfamiliar and strange territory for me; and in an odd way it is also interesting. Interesting, and quite frankly, fascinating. The body is an amazing system in how it handles the chemo drugs, processes them, and subsequently recovers.   It’s an amazing system that is going to kill a pretty dangerous cancer.